Natalie Queen-Riverside On Monday May 15, 2017, I accompanied my younger brother Chris to his endoscopy appointment from Greenwich CT to Queens NY to Long Island Northwell Medical Center. We found out that Chris had a very rare form of stomach cancer. The doctor described his stomach has a leather stomach linitus plastica- What in the world? The doctor then went on to tell us exactly what this meant and what we had to do moving forward quickly! The doctor talked about what he would do if he was my brother’s doctor, but Chris had to take a moment and research everything. Researching was his thing. Until he had the answers himself, he would not move forward. Chris did just that he talked to people and got a recommendation from his Pastor to go to Memorial Sloan Kettering, because they were the hospital around that had the most information on his diagnosis. He met with a couple of doctors and then they proceeded forward with his treatment plan. From his first diagnosis (which he was not told) until end of June, he began his treatment journey. In July 2017, I had to have genetic testing done, because CDH-1 is a mutation that puts one at a high risk of developing stomach cancer. Since this is what Chris was further diagnosed as having, we had to be tested. My mother and I were tested first. Mom tested negative. I of course tested positive. Chris and I have always had the same thing at just about the same time. He always got it first. Being kids, if Chris got something, I was guaranteed to get it shortly after. History repeated itself once again!
What does this positive result mean for me? It means that I get to have testing done, of my stomach and my breasts. Why my breasts if Chris had stomach cancer? Because CDH-1 gives me a higher risk of getting lobular breast cancer. I had my first endoscopy with about 80 biopsies done at MSK as well as my first MRI of my breasts. I was on pins and needles every day until the results came in. My endoscopy came back with no cancer found as well as my MRI. I took a quick deep breath and said until next year. Chris and I talked about having my stomach removed, because that is the only cure for this cancer. I made three appointments to have the operation. I was all scheduled and talked to the surgeon December 5th, 2018, was my day. That surgery did not happen for me. Please understand I wanted it to, but my life was all about taking care of Chris. In the middle of 2018 Chris knew he was not going to win this stomach cancer battle. We talked, we shared, but he was not feeling his life would continue. The cancer spread and he was like Nat it isn’t getting better. We celebrated his last birthday September 29th, 2018, his born day is Oct 1. He wanted the family to be around, and that is what we did. Mom and I went to one of his last doctor’s appointments with him two weeks later at MSK. He had his treatment, and then went home. In November he went to his last doctor appointment came home and was immediately taken back to the hospital. He stayed in the Urgent care area of MSK for 4 days before being assigned to a room. When I talked to the Urgent Care Doctor, he said that Chris looked like a holocaust survivor, that is how skinny he was. The doctor kept him on IV fluids and that is what kept him alive while in Urgent Care and when he was finally given a room. Chris assigned me as his Primary Health Care Proxy. I didn’t realize how much responsibility this would entail until I signed those papers and talked with the doctors daily. We had a family meeting and a doctor team meeting, and Chris made the decision to go to hospice. He didn’t want to stay at MSK any longer, because he felt like they were not taking care of him to the best of their ability. A week later Chris was moved to Calvary Hospital in the Bronx. He was treated with an amazing team of nurses and doctors who took care of him until his last breath on January 20, 2019. Chris was never left alone. There was someone with him 24 hours a day every day.
Chris is the reason why I did not have my stomach removed, nor did I continue my care in 2018 at MSK. I started to have my yearly tests again in 2019, but I have them done at Yale New Haven Health Systems, under an amazing doctor that worked with a doctor at MSK. I get tested yearly and the results come back the same. Benign. I will be tested again in August 2022, where I pray the results will be the same. If I feel different, or symptoms occur, I will call the doctor for an earlier test, but right now, I feel the same.
This journey is not an easy for me, because when I vomit, or my stomach hurts, or when I exercise, I won’t do too much with my stomach muscles for fear that it may do something to the inside of my stomach. My head can tell so many fears that my heart can’t express.
Then I think is today the beginning of a different story for me?
Everyday of my life, I live knowing that my CDH-1 diagnoses lives inside of me. I live my life beginning each day Thanking God and being present in each day. Of course, I have days where I think about this more than I should, and I cry and question God, and then I move forward, because in each day of life, I find something to live for. Chris lived his life every day. We celebrated his birthday September 29th because Chris had plans to fly out of the country and he knew that would be his last passport stamp.
I failed to mention that I have a daughter who is 27, her Uncle Chris was her best friend. I am thankful that she tested negative for this dreadful deadly diagnosis. My older brother Richie tested positive as well, and he had his stomach removed. He lives weekly with issues related to his surgery. My younger brother Chris left behind two children-they are afraid to be tested, but they promise that they will because they saw their father almost everyday before he left this earth physically.
I broke my promise to Chris of having my stomach removed, I am not sure that I can do it. I live my life daily with the faith and strength that God has got me. I am scared, but I can’t allow that to stop what I have now.
I am thankful, I am Blessed, and my story continues……